[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

---

—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

---

How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Andrew Kavchak]

Hi Folks,

Just some updates and thoughts about autism and the recent Ontario election…

During the campaign from Labour Day to October 10 autism played a significant part of the political debate. This is in large part due to the efforts of FEAT of Ontario, the Ontario Autism Coalition (OAC), the Alliance for Families with Autism (AFA), the litigation of cases (e.g. Deskin/Wynberg case), and a multitude of autism related high profile stories since the last election. As you may know, during the last election in 2003 then opposition leader Dalton McGuinty sent a letter to a mother named Nancy Morrison saying that the age six cut off for treatment was discriminatory and if elected he would do away with it. Well, of course he did not and instead appealed a court decision which effectively ordered him to do what he had said he would. Since then we have found out that about $59 million of funds previously budgeted for autism were diverted elsewhere and we still don't have IBI in either healthcare or the school system.

During this election the Liberals promised a $10 million pilot project for IBI in the schools; the Conservatives promised $75 million to eliminate the waiting list, an accreditation system for ABA service providers, and IBI in the schools; and the NDP went a little further with $100 million to clear up the waiting lists, accreditation of service providers, and a clear commitment for IBI in the schools.

During the campaign the opposition hammered away at the Liberals on their lousy autism record and included the statement "do you want four more years of the government suing parents of autistic children?" in the Tory TV election ads. Many people during the campaign said they thought of us when they saw these ads and read articles in which the Tory leader, John Tory, accused the Premier of being "cruel" on the autism front.

Nancy Morrison ended up being an NDP candidate, but regrettably lost to the incumbent Tory. I met Mr. Tory myself during the last week of the campaign and he invited me to participate in a rally and a radio program with him to discuss autism issues. I was very grateful, but regrettably, he lost.

Although the Liberals won a second majority, I believe that this election demonstrated that it is possible to not only make autism an election issue, but one of the main issues, as it clearly got so much attention and is hopefully now on the radar screen for a long time. It has to be until our kids get what they need. This won't happen if our community were to sit back and watch. The work continues. Soon the federal government will resume the Parliament circus and we should expect Health Minister Clement to table his government response to the Senate Report's recommendations before Christmas.

Cheers from Ottawa!
Andrew Kavchak

[Mike & Jean]

Jean (Lewis) on Saturday, October 6, 2007 – 5:51 pm:
We must remind parents once again – this board is ONLY for parents who are running Lovaas-style ABA programs which are being supervised by properly credentialed Behaviour Consultants. In other words, only Behavioural Consultants which FEAT of BC recommends. This DOES NOT include Verbal Behaviour or Fluency based ABA programs. You must identify your Behavioural Consultant in your posting or it will be removed and your posting priviledges will be withdrawn. On a similar note – discussion regarding alternative treatments and therapies should not be conducted on this website. We ask that everyone using and taking advantage of this free FEAT of BC service read and respect the guidelines.

Thank you for your cooperation.

[Andrew Kavchak]

Interesting developments "down under"…A bidding war for autism during an election? Did I read correctly: "There will also be new Medicare items to diagnose and treat children…" Maybe it is time for an international FEAT to be created?

___________________________________________

From: http://www.theage.com.au/

Howard pledges $190m for autism

Annabel Stafford and Carol Nader

October 4, 2007

THE health bidding war continued yesterday as Prime Minister John Howard trumped Labor's pitch for the parental vote with a $190 million plan to help children with autism.
Opposition Leader Kevin Rudd was forced to match the Government policy, which dwarfed the ALP's own pledge to set up at least six autism-specific child-care centres.

"The purpose of being an alternative government is not to oppose everything that Mr Howard puts forward," Mr Rudd said. "Where it's a good policy we would seek to combine it with ours on a bipartisan basis, and when it comes to autism we should take the politics out of it."

Nicole Rogerson — who founded Autism Awareness and set up a centre for autistic children to get intensive behavioural therapy after bringing up an autistic son — declared the Labor plan "incredibly disappointing".

Ms Rogerson — whose Lizard Centre was one of several sites across the country at which the Coalition launched its policy — said advocates had "been up front with the fact that if you've got 30,000 kids in Australia and each of them have got two parents and four grandparents — that's at least six votes a child."

The $190 million, five-year plan will provide up to 200 new autism-specific playgroups for 8000 children as well as intensive one-on-one or small group programs for up to 4000 children with moderate to severe autism. For 1200 severely affected children, the Government will provide up to $20,000 over two years to help pay for intensive behavioural treatment.

There will also be new Medicare items to diagnose and treat children and $46 million for education and support programs for parents and teachers.

Meanwhile, Health Minister Tony Abbott said Victoria's public hospital system was better than those in other states.

As Mr Howard continued his criticism of the NSW Government's management of hospitals, Mr Abbott yesterday said Victorian hospitals "generally operate better" than those in other states partly because they still had boards, a management structure absent in most states. "It's good to see that at least in Victoria we do still have strong hospital boards," he said.

The Howard Government announced this week that, as part of the health funding agreement with the states, the nation's 750 public hospitals must have their own board.

[Isaac]

Hello everyone,

Speaking to the recent post by Kathy Belrose ("school problems"), here are some thoughts.

Appropriate in-class support for children afflicted with ASD (Autism Spectrum Disorder) is no longer discretionary on the part of school districts in British Columbia. This is now a settled matter of case law in B.C., after a 2006 superior court ruling in the province (The Hewko case; please see http://tinyurl.com/36jbyp for more details).

Significantly, the provincial government did NOT appeal the landmark case, so the precedent stands, effectively as law in B.C., to protect the rights of children with autism in the public school system. The meaning of the ruling (important to stress) is to ensure COMPETENT, meaningful in-class support to enable equal access to education for children afflicted with ASD.

I would encourage parents to please consider use of the 'Hewko vs. BC' precedent for your own child, even if this means hiring your own lawyer at some point, to more effectively "communicate" the profound meaning of this important legal precedent to the local (typically myopic … often malevolent) school district.

School districts naturally want to ignore this case, pretend the B.C. Supreme Court Hewko ruling never happened, and that it could never possibly apply to them (yeah, right); please disabuse them of the notion.

The 'Hewko' ruling was made for you! Now this "Bud's" for THEM!

[Andrew Kavchak]

The article below is on the website (see the link) with a very nice picture
of Senator Munson and his colleagues.

http://www.midnorthmonitor.com/webapp/sitepages/content.asp?contentid=708260&catname=Local%20News&classif=News%20Alert

Printed from http://www.midnorthmonitor.com web site Tuesday, October 02, 2007 –
Midnorth Monitor
——————————————————————————–
Senator proposes national autism funding program

by ROSALIND RABY

Tuesday, September 25, 2007 – 17:00

Local News – A well-known Senator is proposing the federal government put a
national funding program in place for autism. Senator Jim Munson told the
Mid-North Monitor that despite health care being a provincial mandate, that
a national program is vital to assist those afflicted with autism and their
families.

Munson is a well-respected Canadian journalist. He also recently served as
the Director of Communications to the Prime Minister. He has had an
extensive career in journalism both in Canada and abroad. He previously
served as a television correspondent for CTV reporting on national events in
the public and political arena. He was CTV's Bureau Chief in Beijing from
1987 to 1992 reporting on events in China such as the Tiananmen Massacre of
June 4, 1989. He also served as Bureau Chief and senior correspondent in
Halifax, Nova Scotia and London, England. He has covered the Iran-Iraq war,
the Gulf war and the Philippines.

Munson has twice been nominated for a Gemini Award in recognition of
excellence in journalism.

Munson was in Espanola and Elliot Lake earlier this month as a guest of
federal Liberal Member of Parliament, Brent St. Denis, to meet with affected
stakeholders, as well as Special Olympians from Elliot Lake. He admitted he
has personal reasons to be involved in both issues.

"My wife, Ginette, and I live in Ottawa with our two sons, but we lost
another son at a very early age," explained Munson. "Timothy was born with
Downs Syndrome and lived less than a year, but he is what motivates me to
work on issues involving children, especially Special Olympians and those
with autism.

"I became actively involved in the fight for autism support when I was
walking on Parliament Hill some two years ago.

There was a lone father, Andrew Kavchak, dressed in suit and tie, protesting
with a placard and begging for support for his child with autism. Here was a
civil servant, a successful individual, spending his time trying to win
support for his and other families affected by the affliction. It broke my
heart. I knew this was a cause worth fighting."

Munson helped the Standing Senate Committee on Social Affairs, Science and
Technology develop a public inquiry and report, Pay Now or Pay Later, that
clearly outlines a strategy to assist autism families. It is the final
result of a two-year enquiry on the funding for the treatment of autism.

"Autism is a crisis in Canada; it's an epidemic," he said. "It is not just a
provincial issue. However, since health is a provincial mandate, there is a
hodgepodge of policies that differ between the provinces. Alberta has an
excellent funding program to help families with autism, but Ontario doesn't.

"The strategy calls on federal Health Minister, Tony Clement, to have all
the stakeholders come together to develop a national strategy on autism,
including his provincial counterparts, develop funding for every province,
to break down the provincial barriers and to come up with a unified plan
that provides fair, equal funding, treatment and services to every person
with autism and their families.

"We have to think outside the box and get on with the job. We have to put a
new system in place. Families are isolated and feel so alone. Some are
breaking up. Some have no choice, but to move so their child can get the
help they need. They should not have to do that. They're crying for help and
we have to answer that call."

The report was released in March of this year. Munson said he would now be
pushing for his fellow senators to keep the issue and the strategy on the
front burner.

"We have to start putting pressure on the federal government to implement
the strategy, to provide targeted funding for autism. That is already in
place with other health needs. For example, the federal government will
provide targeted funding to the provinces for specific pieces of equipment,
such as MRIs. That money must be spent on that equipment. The same can be
applied to autism funding.

"We have to eliminate waiting lists for the programming that will help the
children, put a certified training program in place, create a centre where
autistic families can source funding and information, and provide the
funding so each and every autistic person gets the help they need.

"We have a national strategy for mental health. Why shouldn't there be one
for autism? It is a special need like any other and the federal government,
as well as all provincial governments, has the responsibility to meet those
needs," emphasized Munson.

Munson said he plans to continue travelling across the country to gain
support for the strategy. He encourages the public to write letters to MP
Brent St. Denis and other members of Parliament to ask for the strategy to
be put in place.

"These individuals, the families, need help now. The public can play their
part by supporting the strategy. It only takes a moment of their time to do
so. We have to keep pushing for this," concluded Munson.

[Andrew Kavchak]

Another interesting article about parent power in today's Globe and Mail (Monday, October 1, 2007).

____________________________________

Plight of autistic children resonates in campaign
KAREN HOWLETT

October 1, 2007

TORONTO — When Liberal Leader Dalton McGuinty wrote a letter in September of 2003 to Nancy Morrison, the mother of an autistic son, he had no way of knowing it would come back to haunt him four years later.

Ms. Morrison had asked all three political leaders during the 2003 election campaign for their party's position on funding the cost of therapy after autistic children reach age 6. She told the leaders she would e-mail their responses far and wide.

Mr. McGuinty promised in the letter to end the previous Progressive Conservative government's "unfair and discriminatory" practice of cutting off funding when children turned 6. "These children need – and deserve – our help and support," the letter says.

The problem for Mr. McGuinty is that Ms. Morrison kept her end of the bargain and he didn'••••••• was not until two years after he was in office – when the courts ruled in July of 2005 that the province was violating the children's constitutional rights by denying them treatment – that Mr. McGuinty lived up to his promise.
He has the politically savvy activist to thank for the fact that his letter found its way to families as far away as Europe, Saudi Arabia and New Zealand, thrusting services for autistic children into the spotlight in the current election campaign. The topic has been embraced by both the New Democrats and the Progressive Conservatives.

The rising incidence of autism alone does not explain why the issue has been front and centre – the disease affects one in 165 children. It's also because the campaign has revolved around two issues – Progressive Conservative Leader John Tory's contentious plan to fund faith-based schools and Mr. McGuinty's broken promises. The one involving autism was considered so egregious because it involved vulnerable children.

"A lot of people in our community changed their vote to Liberal because of those promises," said Ms. Morrison, the New Democrat candidate in the riding of York-Simcoe. "This was one of his biggest broken promises."

Mary Anne Chambers, who served as the Liberal Minister of Children and Youth Services, said her party more than tripled annual spending on autism services to $140-million, doubled the number of children receiving intensive behavioural intervention therapy and dramatically reduced the waiting list for assessing children. There are 900 children on the waiting list.

The IBI therapy, a system of behaviour modification to teach autistic children language skills and how to play appropriately, costs an average of $70,000 a year for each child.

But even Ms. Chambers conceded that autism has generated more than its share of interest in the current campaign.

"It's a little bit of an interesting one, to say the least," she said in an interview. "It's one of those things that has a very political character to it."

Mr. McGuinty's letter has been quoted repeatedly by Ms. Morrison and other parents at rallies and at the provincial legislature, who have reminded politicians repeatedly of the emotional and financial toll autism takes on families.

Ms. Morrison said she and her husband have nearly gone broke refinancing their home in Bradford, Ont., to pay for treatment for their eight-year-old son, Sean, who spends mornings at home with his IBI therapist and afternoons in a Grade 4 classroom.

Sean is of average to above-average intelligence, Ms. Morrison said. "We just need to work at getting it out of him."

[Andrew Kavchak]

Another article about the politics of autism in the Ottawa Citizen (there is an election going on in Ontario right now).

http://www.canada.com/ottawacitizen/news/story.html?id=dfe6ae0c-c925-46d0-ae39-bb6d715588c0&k=85706

[Cathy Fitzhugh]

{Hello Fellow FEATers}

I was lucky enough to attend the "sold out" FEAT fundraiser at Capone's last night and wanted to fill you all in on the event.

Over half of the attendees were NOT parents of children with Autism. They are people who are fair, and clever, and want, as badly as we all do, to see the right thing happen: to see the government come forward and finally cover Autism through medicare. To see the right thing done. They genuinely care about our cause and wanted to help.

Jean and David O. Marley spoke (we are very lucky to have David O. Marley working with us…) both giving very focused, and inspiring speeches about the current state of affairs and the launch of the "FEAT-BC goes coastal" campaign. (Something I'm sure we'll all be hearing about soon.)

CBC-TV's "National" news team was there to (block my view of Jean and David O. Marley,) and to cover the event, as part of their plan for a possible mini-documentary on "autism activism". I really hope, for all of us, that this happens.

Parents: there is Federal election coming. It could come any day now. We need to step up to the plate and help. We can make a difference. Every letter we write, every newspaper article we get published, or e-mail we send, makes a difference.

I know how busy and overwhelming our lives can become, but taking the time out to let your newspaper or MP know that this matter matters…is vital.

Governing officials need to know, that we know, what's up.
We need to vote for and support people who are going to support us.

Remember, no matter how our officials try to back out, we need to tell them: this is MEDICAL issue, not a POLITICAL issue. Don't let them pull you into that trap. Our children are suffering, and deserve medical care.
Keep it simple.

There was such a warm feeling in that room last night.
It was fun. Food and drink and conversation and inspiration.
All evening, people were supportive, engaging, and truly interested in Autism. People want to know how it feels.
People want to know what it's like.
We need to tell them.

Thank you so much to everyone that put this event together and and made last night's event what it was.

I remembered, again, that we are not alone.
There are many of us.
All over Canada.
Working hard.

Let's make sure we take the time to let it be known.
Our voices need to be heard.

{Cathy}

[Dave Collyer]

Hello all,

re. the Select Standing Committee on Finance and Government Services

Once again the Select Standing Committee is gathering public input with regard to the upcoming Budget for the next fiscal year. If you would like input into budget allocations go here:

http://www.leg.bc.ca/budgetconsultations/

Dave.

[Andrew Kavchak]

Soaring rate of autism lends urgency to call for action

By Steve Geissinger

MediaNews Sacramento Bureau
San Jose Mercury News
Article Launched:09/19/2007

SACRAMENTO – Government agencies are facing a new public health crisis – a dramatic increase in autistic children – and must swiftly explore how best to provide better care and protection for them over their lifetimes, a blue-ribbon state commission concluded Tuesday.

The California Legislative Blue Ribbon Commission on Autism said its overall findings included a lack of screening for the disorder, poor public awareness generally, barriers to seeking care for the afflicted, and overlapping efforts between the public and private sectors that need to be better coordinated.

"Throughout the state," the report says, "there is an intense need to plan for and address the impending housing, transportation, employment and educational needs of the tsunami of young people with" autism.

The panel's report recommended the state adopt legislation next year to immediately address such problems.

The panel also concluded that urgent efforts should be made to better educate police and judges so they don't accidentally abuse those with the disorder, which can be characterized by seemingly aggressive behavior.

Senate leader Don Perata, an Oakland Democrat, who authored a bill two years ago forming the 16-member panel, said the report will allow lawmakers "an opportunity to link the science, knowledge and best practices regarding autism to public policy."

The commission's recommendations included:

• Bolstering early identification and intervention.

• Working toward better education of those with the disorder, through the college years.

• Establishing regulations to ensure appropriate and equitable health insurance.

• Creating a statewide public awareness campaign.

The disorder has increased more than 600 percent in recent years, now affecting about one in every 150 children. It is the fastest growing serious developmental disability in the United States.

[Author]

Replies